EEG

Aug21
by Jo Tann on August 21, 2017 at 11:57 am
Posted In: Personal

 

The Friday after the MRI Alex was given the all clear to come home. We had a referral in the works for Neurology and were told we would be informed of our appointment time very shortly. We kept an eye on him obviously, but no more episodes occurred and the gastro symptoms went as well. A week or so later we had a letter in the post telling us Alex had an appointment for an EEG on August 14th.

Phil went in a little late to work and dropped Jenny to kindy and I took Alex off to the WCH. We hadn’t a long wait once we checked in at the Neurology clinic and were soon called by a very nice doctor – Dr Alex :). The process of getting an EEG isn’t the worst thing we have ever had to put Alex through, but since it involved someone touching his head I was expecting some resistance from him.

First Dr Alex had to draw marks on Alex’s head with a special pencil to mark out the placement of the electrodes, unfortunately this meant we had to remove Alex’s hearing aid headband, so communication got just that bit harder. Alex was pretty good through this bit – mainly because the pencil was in his favourite colour – red!
Then Dr Alex placed the electrodes. The end which goes on your head is cone shaped with a hole at the top, about half the size of your little fingernail, and to attach it to your head the little bowl is filled with industrial strength hair wax and then pressed very firmly to your head until a little bit of wax pokes out of the top.
It took a great deal of fast talking and some distractions in the form of adding up puzzles to stop Alex from pulling them off as soon as they were placed! Once they were all on he was quite calm about the whole thing however, and we settled down to read a braille book I had brought with us.
The test itself only lasted around 20 minutes and Alex was then able to help pull the electrodes off, the hair wax didn’t come out easily so we ended up getting the worst of it off and deciding to leave the rest for bathtime! After that it was off to the cafe for some milk and a chocolate frog, and then back home.

We weren’t given a time for a follow up appointment to review the results, again, we would be sent a letter, but the results would be in the system in a few days, so at Alex’s next oncology review on the 21st, the doctor seeing us would be able to access them and let us know.

This proved to be a fortuitous arrangement as about a week later we recieved a letter from the Neurology department which ran as follows.

“Our medical staff have assessed your referral and based on the information provided to us, we are unable to allocate an appointment at this time.
Alexander wil be placed on the Neurology clinic waiting list. The anticipated waiting time due to current demand is likely to be greater than 6 months”

It does you good to laugh doesn’t it 🙂

Still, there have been no more episodes, Alex is back to his usual self and is even putting on some weight! So (touch wood) everything is back to normal, or at least as normal as it gets around here 🙂

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There’s a reason people hate Mondays…

Jul27
by Jo Tann on July 27, 2017 at 7:30 am
Posted In: Personal

Our last post detailed Alex’s port removal – no more safety blanket. The port hadn’t been used in a year or so and the MRI scans were good so the time seemed right to remove it. On Monday just gone the capricious whims of fate decided to prove us wrong.

Phil received a call from Alex’s school, he had collapsed a few times and was suddenly talking gibberish. Phil’s amazing employers waved him goodbye and Phil took Alex to the Women’s and Children’s. Initially we thought this was something we had experienced before – a shunt malfunction – if the shunt pumps out too much fluid then the brain starts to press on the base of the skull causing some compression and leading to difficulty speaking etc. We expected a few scans, a shunt readjustment, an overnight for obs then home.

The difference initally this time however, was that Alex no longer had an access port, so he had to have a canula in his arm instead. On the one hand, this was good, the nurses in ED are very experienced at putting canulas into little arms, but don’t have the same experience accessing ports. In the past ED accesses were fraught experiences. On the other hand Alex now had to tolerate a canula in his arm – complete with foam board under his arm and a bandage to secure it all. Phil didn’t elaborate completely about the circus which ensued but the look on his face told me it had not been a fun few hours.

The other downside to having a canula in your arm is that once you are hooked up to a drip you can’t take your shirt off, so changing into his pj’s come bed time wasn’t possible.

Alex had blood taken an X-ray of his shunt and a CT scan, which, courtesy of Daddy’s fast talking, was done without the need for sedation! The scans didn’t show any obvious issues so the boys were installed in the Kate Hill ward and settled down for a relaxing night of 2 hourly obs. Unfortunately Alex had another episode during the night – sitting up but unresponsive – even when the ipad was turned off! – then talking gibberish. Fortunately it didn’t last long and was witnessed by the nurses.

Tuesday brought more tests, but no more episodes and a quieter night due to a room change (except when I brought Jenny to visit because the room was right next to the play area and she was having a great time playing in their toy kitchen).

Wednesday morning and the neurosurgery team decided that since there had been no more episodes when Phil felt Alex was back to his usual self they could go. Phil decided to let Alex have a little play to see how he went before packing up, and was glad he did as Alex had another episode a half hour later, followed by gastro like symptoms.
Unsurprisingly it was decided after that to get Alex into the MRI machine. The first estimate for a slot was put at 4pm, then pushed back to 5pm, then to 6. finally at 6.30pm Phil sang the rainbow song and Alex smelt the colours.

Jenny and I arrived only a few minutes after Alex went in, so when Phil came back up from radiology we went with him for tea in the WCH cafe. Jenny was certainly very happy to see her daddy and much honking of noses and belly chuckles ensued. The MRI took longer than usual – a full 2 hours – and at 8.30 we got a call asking for one of us to head to recovery.

Alex is usually pretty good coming out of anaesthesia, unless things are not as they were when he went under. Unfortunately for everyone, where the canula was sitting in his right arm was looking a little red so they removed it and put a new one in, but in his left hand. So when I went into recovery he was trying to pull it out, and it took a solid 45 minutes to calm him down and convince him that he couldn’t remove it and have it put back in his right arm. Initially when waking up Alex won’t let anyone touch or hold him. When you get him to the point where he will sit on your lap and cuddle you know you are past the worst, and thus it proved tonight. Once he consented to a cuddle with blankie and me I was able to ask him about his day, he very proudly told me about playing skittles in the toy room, and how he had knocked 10 of them over at once!

A short walk back to the ward and he was very happy to see Daddy and Jenny, gave out lots of cuddles and kisses then settled in for a cuddle with Daddy.

Fortunately I’d remembered to pack Jenny’s pyjamas and Phil had wrangled her into them by the time I got back with Alex. We left the boys at 9.30 (in another new room thanks to the gastro symptoms) with our fingers crossed for a quiet night for them. With luck we will get the MRI results early tomorrow morning, we will keep you posted!

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Ex-port

Jun22
by Jo Tann on June 22, 2017 at 7:30 am
Posted In: Personal

So it’s hard getting out of bed on Mondays at the best of times, but this Monday was harder than usual – the alarm went off at 5.45! Alex and I were headed into DOSA for 7am. Monday was Port Removal Day! We only had a week’s notice of the date, we were on the list of ‘non urgent’ surgeries so we were given a slot when one came up.

The DOSA lists are organised by age – the younger you are the earlier you go. On Monday, Alex had the dubious honour of being the oldest and therefore the last on the list. We did all the paperwork, saw the surgeon and the anaesthetist, had his obs done and made the happy discovery that he has nearly cracked 16 kilos! (15.8kg to be exact) and settled in to wait. Alex was very patient and when we finally got the call at 11.15am he was super excited to smell the colours. Colours smelt and rainbow song sung, I left him in the capable hands of the surgical team and went to grab some lunch, and after about an hour and a half I headed up to wait in the day surgery area.
Nine times out of ten Alex comes out of the anaesthesia really well, the tenth time is usually a big melt down. Usually this is triggered by something being on his person that wasn’t there when he went to sleep – usually a canula in his hand. This time I thought I might forestall this reaction by telling Alex that there might be a canula, and if there was to just very calmly say ‘excuse me nurse could you please take this out of my hand’. I also mentioned his t-shirt might be off and again to just calmly ask for it (while this might seem a bit odd that he’d be upset about a t-shirt, the one he was wearing is a bit of a special one with a googly eye on the front). According to the nurses, this was exactly what he did, beautifully calm and with lovely manners.

Unfortunately I’d forgotten to warn him about the dressings he’d have over the wound sites, so at 12.57 guess who got called into recovery! It certainly wasn’t the worst melt down we have had in recovery, but it took a fair bit of fast talking to convince him that he couldn’t take the ‘bandaids’ off! The surgeon told me that the surgery went well, the cord was a very gunky – but that was expected after it had been in for 4 years – and that it had come out whole. One of the risks with this surgery was that the end of the tube could break off during the removal and they’d have to go fishing for it. The cord had become a little stuck during the surgery so a second incision was made in his neck to help with the removal.

After Alex had calmed down, we had some stories and a bit to eat, then headed across the road to visit his friends over at little heroes. A big drink of milk and some cuddles and high fives later we headed back to the car and got home at 3.30.
Since he was feeling a bit sore the next day he stayed home from school, but managed to get through the day without needing a nap and was well enough to head to school on Wednesday.

Having the port removed is a big moment for us, (no more safety blanket!) but since we only knew a week out that it was happening we didn’t really have time to worry or stress about it. It feels like we are, hopefully, past the worst of what’s happened over the last 4 years, and the relief that feeling brings is wonderful.

Unfortunately, the relief we feel is not universal. Some good friends of ours were very recently given an MS diagnosis. The sudden, out of the blue announcement that you have a serious medical condition which will now proceed to turn every single facet of your life upside down is horrendous. We have been there and it’s one of the worst things ever. So we want to send love and support their way, and the knowledge that once this horrible shock wears off, and it does eventually do so, things will get better, because the greatest of all gifts is hope.

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